Connecting with others who have lung cancer

When I was first diagnosed with lung cancer I felt incredibly isolated. Everywhere I looked I saw seemingly healthy people. I felt that none of them could possibly comprehend my fear, my sadness and my anger. I desperately wanted someone to talk to who was going through the same things that I was.

At the hospital I was surrounded by others with cancer, but seldom would any of us speak to each other. On my floor, I was almost always one of the youngest patients and this only added to my feeling of being alone. On two different occasions I reached out to women with very similar diagnoses whom I had read about in the media. I never heard from one of the women, and although the other woman did contact me, she didn’t carry through on a plan to meet for coffee. I was leary of joining any support groups, and this only affirmed my position–I was too raw to weather personal rejection.

When I learned that my cancer was terminal, that sense of isolation only increased. And then, quite by accident, I stumbled upon that world of support I had been looking for. I was researching recurrent lung cancer on the internet and I came across the Lung Cancer Alliance Survivors Support Community.

It is an international forum where people with lung cancer as well as their caretakers can post questions and initiate dialogue with the other members. It is available 24 hours a day.

In the beginning I would log on but only read the posts and comments. Eventually I joined the “conversation”. Soon it became a daily habit that I refer to as my devotional. It is a safe and nurturing place to share experiences and concerns. Participants are generous with their support and their knowledge, and no question is considered too frivolous (nor does it fail to evoke responses). The only two subjects which seem to consistently provoke controversy are those concerning smoking/nonsmoking status as well as the amount of publicity and funding that goes to breast cancer (more on both of those subjects later!).

By participating in this forum I have enriched my knowledge about lung cancer. I have also been able to use my own experiences to get information out there to those who might not have it (get your tumor tested for mutations!) I have made friends and have marveled at the opportunity to have dialogues with people all over the world.

For those of you who are interested, log onto the Lung Cancer Alliance site (an advocacy group dedicated to survivors of lung cancer) at:

Scroll down to LCA Survivors Community and press join. It’s that easy and the degree to which you participate is entirely up to you. In my case, joining this community has not only addressed my sense of isolation, but has made me feel more empowered.

4 responses to “Connecting with others who have lung cancer”

I am 53. On January 14 ’09, I had some upper left abdominal pain that started early in the morning. In the past, I had had mild ulcer-type symptoms at times if I took ibuprofen, aspirin, or for no apparent reason. That day, the pain became worse over the course of the day and was throbbing and radiating from under my left ribs to my back. I had never gone to the ER before, but I called a friend who is a family practice doc I work with and asked if he thought I should go in. He said yes. I did. My blood pressure, which is usually very good, was sky high because of the pain. They did blood and urine tests–nothing. They gave me some IV pain meds. Hours later, after no findings, they did a CT scan. This revealed nothing to explain the stomach pain, but it did show a small 8 mm ground glass nodule in my left lower lung lobe. They discharged me with some lose dose pain meds and said I should followup with a GI specialist. In two days, the stomach pain disappeared and has never returned, and has never been expained…

I followed up with a pulmonologist about 3 weeks later and I got a CT guided needle biopsy that revealed adenocarinoma with mixed BAC features. I went to Mayo Clinic in Rochester MN. They did another CT scan and Pet scan. They found another very small nodule in my right upper lobe as well–uptake on the Pet was very low even though the cancer was confirmed. On March 11, I had surgery at St Mary’s Hospital in Rochester–a part of Mayo complex–and had a lower left lobectomy, an upper left lobe wedge resection, and an lymphadenectomy. The lower left lobe nodule was 1.1 cm x .8 cm with a high percentage of adenocarinoma with a small percentage of BAC cells. The upper left lobe nodule was even smaller with 90% BAC cells. I had no lymph involvement. They classified me as having 2 primary stage 1a nodules.

The CT scan had also revealed a small cloudy patch–I would not be able to see it if it was not pointed out to me but they still call it ground glass–in my right upper lobe. Two weeks ago, I had a followup CT scan that showed no change in the right upper lobe area of suspicion. They told me that this was “good news” and that I was, as of now, “cancer free.” Hmmmm? Cancer free because they haven’t confirmed what is in the right lobe? I guess the answer to that is “yes.” The plan is to watch and wait, follow up with a CT in SIX months.

When Linnea described trying to live a normal life and that by all appearances her cancer was a “thing of the past”, I guess that is where I am at right now. I feel like I am in a constant state of limbo–which I guess we all are–that isn’t being treated at all even though, from what I have read, the probability of this actually being cancer goes up significantly if you have had it somewhere else in the lungs. I guess I don’t really have good words to describe the kind of fear and loneliness I am feeling now. I have been a bit afraid to write because I know from reading the blogs that so many are dealing with much more difficult situations. But that is why I am here writing, to connect, to find the words, to reduce the isolation, to share a story that might help someone else. I was also wondering if anyone had any thoughts about my “treatment” plan of watching and waiting–that does not feel right to me. I am thinking about getting another opinion. I have had no other treatment (chemo etc) because they said they don’t use that if there is no lymph involvment. I would appreciate any thoughts or info you might have.

Rosie–thanks for telling your story. In truth I have never been told that I was cancer free–and although I am able to live as if I am–I am not considered cured. I did the watch and wait for 2 1/2 years–and actually I suppose we are still watching and waiting (scans every two months). It is not easy–but try to devote as little time as possible to worrying and the balance of your time to living life fully. I would have loved to have had “clean” scans, but stable is a close second. Best of luck and stay strong.
Linnea

Thanks for your response. I am wondering if, in your 2 1/2 year waiting period, you were presented with other options (other than waiting) and how often did you have the scans done over that period? You also had some chemotherapy after your surgery. I did not and it seems that most people do–so I wonder about that too. I guess I need to have a heart to heart with my oncologist, expressing my concerns and finding out if there are other more conservative approaches. I think one thing that is missing for me is that at Mayo, there really hasn’t been a treatment team per se, and not very much opportunity for discussion–cross disciplinary or otherwise. Although Mayo has some great doctors and specialists, collaborative care and addressing the emotioal impact of this diagnosis are not their strong points and perhaps I need to find a place where I can feel better about that. I am probably at the lowest point I have ever been since the diagnosis–not sure why exactly. Anyway, I appreciate your encouragement and the courage you have shown in fighting this disease.

Rosie–I was on an every three month scan schedule. There was no other option (although that was frustrating–and particularly so for my husband who is action oriented) At one point perhaps 1 1/2 years in–I was on the table for a biopsy when the scan showed what seemed to be improvement and they decided not to proceed.
My oncologist was just weighing quality of life issues as well as a do no harm approach. Quite honestly, the whole game changes with a recurrence and there is not quite the hurry that there was initially. Unfortunately, this is in part because therapeutic options no longer include “cure”. Just keep in mind that it is possible to manage lung cancer even when a cure is not available.
It does sound like you need to revisit some issues with your oncologist. Questions should not go unanswered. My adjuvant chemo was ordered because of the size of my tumor (5 cm). It was a huge hit on my immune system and given the rapid return of my cancer likely wasn’t effective. Therein lies the hope of targeted treatments such as the trial I am enrolled in now.
Stay in touch Rosie–I would love to hear how you are doing.
Linnea